HADERA, Israel, Jan. 19 /PRNewswire/ -- Yulia and Gili Ben-Moshe, who live in a small town in Israel, were confronted with every parent's nightmare: their third child, Lavi then three months old, was diagnosed with Canavan Disease.
Children with Canavan Disease first lose their sense of sight, then their hearing and their motor functions. Usually, before age 4, the disease kills off their brain cells and the children die.
It took the parents 24 hours to start their quest to save Lavi. They went online and found Dr. Paola Leone, the leading American expert on Canavan Disease who works at the UMDNJ-Robert Wood Johnson Medical School, which develops innovative treatments for Canavan patients.
Today, at 20 months, Lavi is considered a medical miracle. He is progressing neurologically – he can see and hear - defying previous dire diagnoses. But unfortunately the existing drugs alone will not slow down the progression of the disease.
Lavi's only real hope to defeat this disease is by undergoing an innovative brain surgery, transplanting stem cells into his brain. This is a real opportunity for a radical scientific breakthrough in a conservative financial climate. Such a breakthrough would spur interest in the development of new treatments for Tay Sachs, Rett Syndrome, Multiple Sclerosis, Parkinson's disease, Alzheimer's Disease, etc.
Dr. Leone is conducting basic scientific stem cell research that holds hope for Canavan patients. Since the disease kills off brain cells, Dr. Leone believes that implanting stem cells into the brains of children with Canavan would result in the proliferation of functional brain cells. She is now testing her theory in the laboratory, and thinks clinical testing will start as soon as she scientifically proves the efficacy and safety of the stem cell treatment. The clinical protocol to use stems cells to treat Canavan patients should be approved within 24 months by the Food and Drug Administration (FDA). The subsequent clinical trial would include 15 children with Canavan Disease.
"Lavi's psycho-motor development has been improving greatly since the pharmacological therapy began," says Dr. Leone, "The therapy is preserving his brain but is not curing the disease. While Lavi and many other children are struggling to change their prognosis, scientists are working incessantly in my laboratory to bring about a cure. The timing and success of a cure for Canavan Disease fully depends upon the availability of appropriate research funds that would also model the cure for other neurodegenerative diseases."
The only barrier between Lavi and this surgery is a budget of USD 1.5 Million.
The family with their resources and the open heart of the Israeli people, managed to raise USD 500,000 for Lavi's medical treatments, as well as USD 200,000 for the research. The challenge, to close the gap, is to raise a further USD 1,300,000.
As we are facing a critical time in Lavi's life, there is no other choice but to approach the generous philanthropists of the world to ask for support.
The struggle for Lavi's life became, more than anything, a journey of acknowledgement to the human spirit.
The family partnered with an Israeli start-up, called give2gether, which developed an innovative platform for micro-philanthropy. They built a website which chronicles Lavi's life journey, and enables grass roots fundraising.
The site URL is http://www.give2lavi.org. Yulia and Gili assure that all the money raised will to fund the research. They hope that each donor will tell Lavi's story to at least 10 friends, and this way, even with small donations they will be able to raise the necessary funds to save their child.
The campaign is supported by social media activity on Twitter, Facebook, SlideShare and other social media websites, currently followed by over 15 thousand people. The family hopes to attract thousands of people from around the world, in a great initiative during January and February, where people will be asked to donate their birthday gifts and Valentine's Day presents to help save this inspiring child.
"It's a very hard for my wife and me to face this ordeal," says Gili Ben Moshe, "but Lavi came into this world with a purpose. We believe it's our privilege to fight for Lavi's life and for the lives of other children who have this lethal disease."
For more information visit: http:/ www.give2lavi.org
Lavi's father, Gili will be raising funds around the world in the coming five weeks: New York from Jan. 31 until Feb. 3, Sydney, Australia - 5th until Feb. 10, from Feb. 10 to 17 in Melbourne, 17 to 24 in Oakland and 24 to Mar. 1 Melbourne.
SOURCE Yulia and Gili Ben-Moshe